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opinion: at 65, canada’s cystic fibrosis fight enters its most critical phase
as we mark these achievements, a dangerous misconception is taking hold: that the work for the cystic fibrosis community is done
3 minute read
a young child inhaling medicine through a nebulizer. this is a critical daily treatment for those living with cystic fibrosis.
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in 1960s rural saskatchewan, an electrician named frank refused to accept the death sentence doctors handed three of his children. born with cystic fibrosis, doctors warned his children likely wouldn’t make it to kindergarten.
determined not to sit back and watch his children die, frank hand-built medical equipment in his workshop, tested it on his own children, and shared it with cf clinicians across the country. his determination and that of other parents like doug and donna summerhayes, who founded cystic fibrosis canada, sparked a movement that transformed cf care worldwide.
as cystic fibrosis canada marks its 65th anniversary, frank’s daughter lorna is celebrating her own 65th birthday, a milestone that once seemed impossible. sadly, lorna’s two brothers died young from the disease. but for the first time in history, more adults now live with cf than children. that progress is worth celebrating.
yet even as we mark these achievements, a dangerous misconception is taking hold: that the work for the cystic fibrosis community is done.
it’s not.
half of canadians with cf die before they turn 40. forty years old. that’s far too many and far too young.
and many still live with the daily impacts of a disease that is chronic and debilitating. while breakthrough treatments like trikafta have given people with cf a better chance, they still have cf, and these new drugs won’t work for everyone, especially those with rare cf mutations or those who have undergone lung transplants.
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and even when treatments are available, access is not guaranteed. provincial and territorial differences in drug coverage create impossible choices for families. in some regions, life-changing medications are fully covered. in others, families pay thousands of dollars out of pocket. geography should never determine health outcomes.
cystic fibrosis also brings a host of other health complications: diabetes, cancer, liver disease, and severe mental health challenges. in the past six months alone, we’ve lost several young people in our community to cf-related cancer and kidney disease. that cannot continue.
but what keeps me up at night is the fear that we’re losing momentum. that people believe our work is over. that complacency will cost lives.
for the first time, the united states is poised to surpass canada’s median survival rates. our advantage is slipping just as gene therapy breakthroughs are within reach.
canada has been a leader in cystic fibrosis research and care. it was canadian researchers who discovered the cf gene in 1989, and the first successful lung transplant happened right here at toronto general hospital. and cystic fibrosis canada has driven unprecedented progress, too, from funding the researchers who discovered the gene, to advocating for newborn screening, to securing access to transformative treatments. few diseases have seen such meaningful change in this period of time.
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but to keep driving change, we must channel the urgency of our founders. we must invest in research to correct the underlying genetic mutation, develop personalized care models, and find treatments for those who don’t benefit from current therapies.
as lorna celebrates a birthday doctors said she’d never see, we must ask ourselves: will canadians, donors, governments, and supporters, rise to the challenge again?
will we invest in the research that could finally deliver a cure?
will we ensure every person with cystic fibrosis, regardless of their postal code or genetic makeup, can access the treatments they need?
will we keep pushing forward so that more canadians with cystic fibrosis reach that 65th milestone and thrive beyond it?
this story isn’t over. we don’t have the ending we need—yet.
kelly grover is the ceo of cystic fibrosis canada.
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